It usually goes like this: “Dr. Jenn, Hi, my name is (insert any name you like) and I’m freaking out. The terror is awful. Shaking. Pain. Weak. Man, it wasn’t this bad THE FIRST TIME I GOT OFF!”
Dr. Ashton talks about kindling: when the brain has been subjected to benzos, off, or lowered dose, then back on. For reasons unknown, the brain reacts MORE after repeated introductions of the drug.
I’ve not read any research as to WHY this phenomenon exists, but I certainly hear about it over and over and over enough that I believe Ashton’s observations are spot on.
I danced with the kindling demon myself. My doctor told me I could rid myself of my benzo (after almost 18 years!) in a month by cutting out 1/4 every week.
Idiot. He was uneducated. I cut 1/2 my dose in a month and NEVER RECOVERED from that initial shock. I tapered down to .3 mgs. Bedridden. Unable to sit on the toilet unaided some days. Intense suffering. A new doctor told me to go back up in dose to stabilize. Gladly. But once up, I didn’t “get stable.” Back down again. The SECOND time around, I was as sick as I was at .3 mgs when I hit .6. I was definitely kindled. In fact, I was so sick the second time around, I threw in the towel, let a new doc pump me full of pheno, and jumped. At 33 months free, I’m still recovering from body symptoms.
Had I NOT gone back up, and stayed the course with a taper, would I be this bummed up this far out? No way to go back to find out. But I do wonder, sometimes.
If you are tapering, PLEASE take it slowly. Listen to your body. If you are off, and holding on by a thread, KEEP HOLDING if you can. Reinstating and tapering again may be harder, and you may be more ill, the second time around.
I am not attempting to practice medicine on this blog. I am trying to warn you of the very real danger of kindling. One of our benzo buddies got free then allowed her doctor to convince her to reinstate and taper more slowly. She’s now on FIVE times her original dose and sicker than ever.
Please take good care of yourselves. Remember most doctors are not benzo-wise. We still need to educate the medical profession. I am hopeful we can get them to understand this syndrome in the near future.
HI, I haven’t posted here in a little while, really been going through a hell within… The last couple of days things have changed in a way that seems strange to me. I feel better than I’ve felt in a long time, I really don’t know if this is just a window but I will take it! I’m also in the kindling category as well.. almost 9 years ago I came off of klonopin not knowing nothing at all about benzos.. Horrific symptoms began to occur, at the time I couldn’t relate it to benzo withdrawal and unfortunately either could the doctors… After some months I reinstated them, but to only have to go off again, then symptoms came back. Finally, I reinstated once again and stay on them for next 6 years and over a year ago I began to come off. It really is very difficult to taper properly off benzos because of how the body has to take so long to adapt just to dose decreases. I tapered very slow I thought but it was still too fast for my body, I ended up increasing the dosage a little then decreasing and then increasing etc… to make a long story short AN ABSOLUTE HELL!!!!
with Drs telling me that its not the benzos doing that its because of another illness.. HOW SICK AND TIRED IT MAKES SOMEONE THAT IS SUFFERING TO HOPE THAT AT LEAST DRS WOULD UNDERSTAND BUT MOST ARE ABSOLUTELY IGNORANT TO THIS CONDITION.
The pain from this is grueling both physically and mentally!!! although it sounds unbelievable of all the pain and suffering you have to endure just to come off. Benzos are in my perspective not worth the pain and agony you have to go through just for a little relief it provides in the beginning for a short while..
So right and true!! This morning, I cried 4 a while & fell asleep as thats not easy at night & know God provided and has..I got discouraged and angry at withdrawal symptoms and self..work night hard to get done with so much in short amount of time especially 1-2 days a week..can I do this..?? When I saw this besides looking up natural sugar foods, uplifted me to keep going!! A facility, not the best, will monitor me then if they keep appts, ugh..another who believes in withdrawals and Ashton costs but determined to see her next month so on, hopes. Thank you SO much. Such support needed!!
Brian, are you off the drug now or are you still tapering?
Well, I really don’t know what I would call mine, it for sure hasn’t been a protocol for benzo tapering. I have been tapering and trying to jump off for a several months now. I have had periods of 3 weeks off and 2 1 week periods off along with 2 days off, 1 day off, 4 days off, and then of course increasing the dosage due to extreme low back pain that lasted for 3 months!! Even with increasing the dosage it really didn’t stop the back pain, I suppose due to the kindling effect. It has ciertainly been a long hard fought road over the last 12 years with this benzo bullshit!!! excuse that word but that it to put as mildly as it deserves to to be called.. My extreme low back pain has recently ended, thank God!!! unbelievable pain and misery with no injury just the benzo bullshit!!
I suppose I would call it today that I’m off again and hopefully not having to take another dose again… I started this taper over 14 months ago and it seems like forever!!!!
Thank you for the kindling caution. I’m struggling with Elavil. My brain has been subjected to numerous psychotropic Meds over the years. Off Valium after 20 years, since 2-1/2 years ago. Trying to stop berating myself. I’ve always been an optimist. I don’t like my recent negativity. Thankful I have an appt with an Integrative Medicine doctor and with a Chinese herbalist doctor next week. I spent over 6,000 on medical last year and that is with insurance. Everything normal. Doctors don’t understand about benzo withdrawal. Hopeful these new doctors will help me so I can sleep more. Can anyone relate? How do you cope?
Hi, Yes, I can relate 100% I too have spent lots of money on medical only to find out that most of my test were normal as well.. I haven’t found a Dr. yet either that understands the severity of withdrawal from long term use of certain meds like Benzos and other related drugs…
As for coping, well, not much as for something that takes it a way and there is almost no support from
Drs, friends, or even family, Even though there is many of us going through withdrawal we really have to go through it alone, I mean that the only way anyone could possible understand is to go through it also… I remember years ago, I remember hearing about people that were on drugs and were saying that they were having problems, I just thought like many others that they were just exaggerating…
Please hold on, there will come a point in your recovery where you begin to feel and think totally different.. when that day comes for you no one can put a date on it but with perserverence it will happen it is happening to me now finally.
Just my personal opinion: Yes, kindling is real (it happened to me- but I made major mistakes which caused it). But it happens mainly when people go completely off the drug and then go back on and attempt to come off again incorrectly. If you’re going to do that, I agree, there’s no sense in going back on at all, b/c you will most likely just be making yourself worse.
In my opinion, there’s nothing wrong w/ updosing (dose-correcting) an over-rapid taper to get stable again SO LONG AS you’re going to 1. updose enough to pull out of the withdrawal, followed by a long hold of 2-4 weeks or more. and 2. come down appropriately after the updose/dose-correction. There are many people who’ve been helped by an updose or dose correction after over-rapidly tapering. There’s also many people who’ve been aided by a reinstatement after CT and proper taper to follow. Nothing in this is black and white. There are risks to reinstatement, however, past 2-4 weeks (which most of us know)– mainly that you’ll only get partial relief from the drug and still be in withdrawal and some very unlucky people go back on and are paradoxical to the drug. However, there are many I’ve spoken to who reinstated months out from a CT and who became totally functional again and the reinstatement was a complete success and they then went on to taper properly and with success. If someone is suicidal and can no longer cope w/ CT withdrawal or is psychotic, I believe it’s much better to risk kindling and reinstate than to risk losing someone to suicide because they can no longer cope w/ a severe CT withdrawal.
If you go back on and then come back off too rapidly again, yes, you’ll just get worse. Same if you updose and then come back down too rapidly as well. You’d also get worse, however, if you continued to taper down from an unstable place such as an over-rapid taper that you never recovered from. This is where the microtapers come into play. From what I’ve seen over the years, people with a complicated history (such as kindling, reinstatement) seem to do much better coming down in their taper with a very conservative microtaper than they do dry cutting pills.
It sounds like you. Dr. Jenn, rapidly tapered, tried to dose-correct but only went up a small amount in dose, not to your initial dose or even close to it? That almost never works. I did the same thing, not knowing any better at the time. I was CT’ed from 3mg K, 1mg X, 10mg Ambien and my doctor only put me back on 1mg K (20mg V). That just put me in tolerance and only partially relieved the withdrawal and then when I tapered down from there, I only got sicker. Had I known then what I know now, I would’ve continued to go up in dose until I felt stable…even if that meant getting back on my initial dose and tapering down from there. Sadly, we don’t get the gift of hindsight in w/d. And at the time, I didn’t have a cooperative doctor either, so that made things harder to do properly.
Most people who go back on have to updose enough until they get to the point where they’re no longer getting worse, which is considered “stable”. Sometimes they even require more drug than they were initially on in order to get stable. But, a lot of people are scared of the drug (and rightfully so- I know I was) and don’t want a long taper ahead of them, so they try to get away with only going back on a tiny dose in hopes that’ll help them somehow. It usually just leaves them sitting in withdrawal and tolerance and then when they come down again, they get worse.
Overall, I think the taper can be more difficult for someone who’s kindled (i.e. if they got off OK the first time, but went back on and are now attempting to come off again), but it doesn’t mean it’s impossible to still taper very slowly and appropriately and come off in a tolerable manner. Someone in my group just did it, actually, with success and finished her microtaper completely well and this was her second time around. So, it’s not hopeless by any means.
Best to everyone!
I am going to have to (gently and respectfully) disagree with you on this one. I DID go back almost to my original dose, just .1 mg from it. I then tapered slowly. But was never really out of the woods and MUCH more sick the second time around. Also, I’ve heard of people who reinstated, indeed got stable or somewhat stable, only to hit severe tolerance within weeks and became sicker than the first time around. We have to be very careful with these drugs. I hear that some people in your group managed ok, but not everyone does. I don’t want to offer false hope to people who are suffering, that if they reinstate, or updose, that it will be easier for them. It might not be! I agree with you that if you are suicidal and just cant hold on, that doing SOMETHING, other than killing yourself, is useful. Clearly. However, what does that suicidal person do if they updose, or reinstate, only to discover that they are as sick or sicker in a short time, and STILL have to face the problems they had that made them suicidal? For instance, I couldn’t bear my symptoms at .3 mgs. Once I updosed, then resumed a slow taper, I was AS SICK at .6 as I had been at .3! It was MUCH harder getting down the second time.
Nick, I bet we can both agree that there needs to be more research as to what causes the brain damage in some people, not all, what causes kindling, and how we can better come off of these drugs. Better yet, NOT be prescribed them long term! And we can agree that slow and steady wins the race! Micro tapers are helpful.
Thanks for your reply and your observations. I hope my reply is taken in the spirit it was written, as my observations and not confrontational.
I don’t want anyone reading my blog to think that reinstating or updosing is a foolproof way to avoid or stop the suffering. I’ve seen it backfire, so many times. I’m glad you have seen it be successful with some people in your group.
I agree with that, not all of us have the capacity to taper the traditional way according to protocols.
Some of us don’t have cooperative Drs. nor do we have the option to alter our lives to suit benzo withdrawal..
Thank you Brian. I’m in AA and it helps. Had obsessive thoughts of suicide today. Called a friend in benzo WD And we prayed together. This time of day I’m restless and find things to just pass the time. I get help from Positive affirmations. This too shall pass. I’m healing I’m grateful for my recovery. Patience. Hope to encourage others.
I wonder if anyone had experience with Elavil withdrawal? I’m tapering down because it causes my heart to race. Last night I slept 8 hours without waking up. This is on 30 mg I’ve been on 50 mg since Sept 2013.
I was definitely kindled by my first CT off of Xanax. The second time I ended up on a benzo it took me two years to come of, and lots of pain. I just stepped off last Sunday. My story: http://soundasacrystal.com/my-story/ The benzo part begins after the second subheading. I recently wrote some more about how I tapered here: http://soundasacrystal.com/2014/04/17/how-i-slew-the-benzo-beast-and-what-i-learned-in-the-process/
Jennifer, personally I would be surprised if kindling can occur after only 2 or 3 on-off cycles of benzos as described in your post. I have been on 30 or 40 on-off cycles of benzo over 15 years and I’m still not sure if I have kindling or not. (On the other hand I most definitely do have some very severe and unusual symptoms which may be connected to my on-off usage.)
The idea of kindling comes from epilepsy and it was later adopted by people looking at what happened to alcoholics. In turn it has been taken up by benzo users. On the way its meaning has changes from being something connected to brain electrical activity (in epilepsy) to something that doesn’t involve brain electrical activity.
This is a much feared phenomenon but I suspect it doesn’t occur anything like as much as I read on some benzo boards.
Really is a must read book. Highly recommended!!!
I had a wonderful day. A window. Thank you God. Hope it lasts. Now taking 10 mg Elavil each evening while still in Valium withdrawal (2-1/2 years).
Holly, I’m so glad to hear that! I hope it last for you as well. two and half years is along time to suffer from withdrawal. You deserve to feel good! Just keep reminding yourself how far you’ve came and it will keep you inspired with hope for a better tomorrow!!
Hi Brian, Your reply keeps me connected to those who have been through this. After my busy good day I have had two down days. Ventured out today and “acting as if” I am happy and well. Watching a movie at the theater helped. I laughed and cried. This moment I am grateful I can go to a movie. Using white-noise machine while falling asleep drowns out the tinnitus. Happy for your recovery Brian. Wishing to encourage all on their recovery path. After 26 years on psych Meds I have 5 more weeks to go in the taper process. I do not wish to regret the past but I believe I would have avoided a lot of pain if I had known about tapering rather than what I did, going off several Meds too quickly. I thank God I am still alive and sane and that I found an Integrative M.D. who I will see tomorrow – he may have some Naturopathic Remedies for the Sx I am challenged with. Hang in there everyone! It feels good to not be numb!
Hi everyone! I haven’t been able to find an answer to this anywhere on the web. My mother in law didn’t realize what she was doing when she halved her .5 K she’d been on for 10 years. Experienced terrible w/d and her husband had to get to the hospital by ambulance as she was psychotic and wouldn’t leave the house. Fast forward 2+ weeks, she’s in a nursing home on 1.5mg K plus seroquel (25 mg 2x/day–don’t get me started) and a zombie. Docs are warning her husband that it could be “her new normal.”
Any medical reason for the huge dosage increase to three times her usual? Is that considered the typical practice, because I’m having to fight the “this is how we always do it” which doesn’t make sense even if one didn’t know the real story on benzos. Why triple it? And wouldn’t we expect her to be a zombie on that?
So please, any advice on (1) yes of course she’s a zombie and (2) should we be fairly quickly tapering her down to her usual .5? (3) any lasting damage from having her on 1.5?
Dr Leigh, I faxed your letter to her useless doctor. Thank you for it. He’s ignoring me entirely and my father in law won’t do anything unless a doctor tells him to. I am not blaming him, but am frustrated. Her kids and I are trying desperately to get her seen by anybody else, even a doc that’s open minded enough to read what is so bloody obvious. Thanks a ton!!!!
It sure sounds like she went into withdrawal. Why they put her on triple the amount is beyond me. Add the seroquel to the mix is horrible, in my humble opinion. But of course the doctors think they are doing the right thing and they are not educated about benzos. I’d be a zombie if I was on Seroquel, not to mention adding a benzo on top of it.
I made sure Dr. Rusen got your email, however, the law states that doctors can not medically treat anyone they have not seen. So I doubt he will be able to provide you with the help that you are requesting.
I wish there was someone there that could educate your father so that he could make better choices about the care of your mother in law.
If her symptoms started during a time she cut her dose in half, it seems that one should be able to connect the dots and see that it is wd. When I cut my dose my half I freaked out too! It is a common reaction, however, doctors do not want to believe that their pills cause these reactions so they blame the patient. 🙁
I hope your mother in law can get stable and back to her normal dose. I don’t know how old she is, but Ashton recommends that elderly people not be forced off of their benzo. It’s a long hard road back to health. I’d sure hate to have to do it in my twilight years.
I hope things get better soon.
Erin I’m sorry for what your mother in law is going through. I would keep looking for an Integrative MD or DO who knows something about the brain and withdrawal from benzos. I get lots of information from madinamerica.
Hi Holly, My full recovery is far from over, but I know I have came along ways and just believe that there is more good things ahead. As far as the tinnitus, I think, at least from what I’ve heard that it is normally the last thing to go. I use a fan at night to drown out mine.
As far as the progress of my recovery, My physical pain and discomfort out by far outweighed the mental. I’m like you, just glad to be off of those meds! Stay strong!
Erin, my hearts really goes out to her, from what I understand from this, like Jenn says, it probably was the sting of withdrawal! The sad part is, no one wants to believe it except the people going or have been through it. I suppose I would hesitate to believe as well If I haven’t had and still have horrific symptoms. It only seems right that Drs. shouldn’t prescribe meds to people that they don’t fully understand. After all they are gambling with people’s lives by doing so.
I truly hope she is going to be ok!
Hi Brian! Good to connect. Received naturopathic remedies from Integrative MD today. Relieved to get answers for some symptoms. Last night I went to sleep while music played but did not use White Noise. Slept all night! Tinnitus I can live with. Embrace the symptom so I don’t obsess over it. I’m extremely suggestible. I know the St Johns Wort will help me with mood, the hormones will help with fatigue and sleep, and other minerals will help me. Now I don’t know what to eat or not eat as my gut doesn’t absorb nutrients. More will be revealed.
I went to a MH facility so I wouldn’t keep going to the ER for arrhythmias caused by Elavil. Elavil stopped arrhythmias gone lat night first time. While there started on Valium again. Took 5 doses in 3 days then stopped. Then started on gabapentin and slept too much. I don’t know what to do. Can anyone help me ?
What do you consider twilight years. I am 60 and just realized today when I found your blog that I have been suffering from this for years and didn’t know it. Have been on and off different benzodiazepines for about 10
Years for sleep issues and now I am in BIG trouble. Karen